Still experiencing gluten symptoms after trying everything…

[Adam Baranek]

TLDR: I have had dermatitis herpetiformis for several years now, but just recently it started becoming a lot worse. Despite going hyper militant on eating gluten free, removing virtually ALL cross reactors to gluten, replacing all of our pots/pans/utensils/etc. and replacing all of our detergents and bathroom products (AGAIN..) my gut is still inflamed from gluten and my gluten spots on my skin are getting worse and worse. I also fear that I may be developing depression, fibromyalgia and possibly other conditions BECAUSE of my gluten condition. Looking for advice on what I can try next, and any help would be much appreciated.

So about 7 years ago (at the age of 22) I was diagnosed with dermatitis herpetiformis, and then sometime later after getting some additional bloodwork done, I was officially deemed to be Celiac (more on the “sometime later” below).

Now for quite some time (up until fairly recently) I ate gluten free, BUT I will confess that I never really bothered to be militant about it. I always consumed gluten free foods only, but I didn’t care much about cross-contamination from eating out. I was still decently cognizant of sharing utensils, pots and pans, etc. and I though my bathroom products and laundry detergent were in the clear. For most of those years, I was overall completely fine, things were good, I wasn’t really all that itchy for the most part and my gluten spots didn’t bother me all that much. Until recently…

Over the past 5 months or so, it feels like my body and my mind are just slowly deteriorating... I feel weak/fatigued all the time, despite getting the same amount of sleep as normal, if not more. My energy levels are shot and I often have a bit of a depressed mood overall throughout the day. My muscles have felt like they’ve atrophied too. And of course, my gluten spots and gut inflammation have been getting worse. All of my problems started occurring about 5 months ago when I had gotten bloodwork done for my gastro. Now I should also confess at this point that I had not gotten official bloodwork done to confirm that I was Celiac, because I just assumed that I was with my dermatitis herpetiformis diagnosis, but, my gastro recommended that I get the bloodwork done just to be sure. However, apparently this requires me to go on a gluten-filled diet for at least a week before they can be certain of the results (btw has anyone else been told this?! It seems f**king insane looking back at it now). So, I did so for about a week, got the bloodwork done and it was 100% confirmed at that point that I was Celiac. For anyone that has my condition, as you could imagine my life was a living hell for several weeks after that.

So now that I’ve explained what has transpired up until this point, below I have listed everything my wife and I have tried to resolve this issue:

1)      Foods/Drinks with known gluten in them had been absent from our house for several months at this point (just for reference)

2)      We started with an elimination diet (carnivore/keto specifically), with the idea of getting totally better first (by basically eating the exact same stuff), and then reintroducing foods later to see what I react to. We are still on this diet to this day. Also, worth noting that we keep very careful track of our vitamins and minerals, and make sure our bodies get what is required.

3)      For quite a while during this period, I had virtually removed ALL known cross reactors to gluten. This included eggs, ALL dairy, coffee, soy, virtually ALL gluten free grains, even a lot of foods with iodine in them (we replaced our salt with one that wouldn’t be iodized)

4)      Alcohol use was cut down significantly. There has only been a day or two here and there where I had a few drinks, and when I did, it was either pure vodka or gin on the rocks with no additional ingredients. No other types of drink were consumed other than water.

5)       Laundry detergent and all bathroom products were replaced with brands that were certified gluten free (a lot of stuff from Vanicream)

6)      Our cast iron skillet, kitchen utensils (cooking and silverware), backing sheets, etc. were all replaced. Sponges and other equipment we use to clean dishes were also replaced.

7)      Started a Food Journal to keep track of every single thing that I ate and how my gluten spots felt each day. This journal has not helped me much at all yet though, as my spots would be perfectly fine one day, but then really bad the next, and I literally ate the same exact thing for the past several days straight… No break in my routine whatsoever and it just feels random…

8)      We have basically stopped eating out completely. All of our food is cooked at home, using the same pots/pans and utensils.

So, with all of that being said… I’m here looking for any advice that anyone could offer. Any help or ideas or insight would be extremely helpful and much appreciated. I don’t know what to do from here, I just feel lost. I get the same bloodwork done every few months to see how I’m progressing, and each time my doctor tells me that I haven’t improved even slightly… He just keeps telling me that I’m still getting “glutened” somehow, but I just don’t see how that’s possible with everything that I’ve done. If you made it this far, thank you for taking the time to read my story.

[trents]

I don't have any ideas as to the "why" of what's happening to you. But if I understand your chronology correctly this all started 5 months ago when you reintroduced gluten for testing purposes. So it seems like that triggered some sort of refractory process.

But here is what I would recommend looking into with your physician: a course of prednisone or some other general immunosuppressant medication to quiet your immune system and get inflammation under control. Sometimes if you break the feedback chain of inflammatory processes it can get your immune system back on track.

[RMJ]

Here are some ideas:

If you have DH you do NOT need to be tested for celiac disease, so perhaps a new gastroenterologist who understands this?  One who would refer you to a celiac savvy dietician to look at everything you’re eating?

Try the “Fasano elimination diet” described in this paper: Indications and Use of the Gluten Contamination Elimination Diet for Patients with Non-Responsive Celiac Disease

Are you eating oats?  Some people have troubles with them.

I hope you can find something that allows you to recover from your doctor-induced glutening.

 

 

[Scott Adams]

I too am grasping at straws here, and it's not likely, as the spirits you mentioned are distilled, but just to over all bases try switching to a vodka that is distilled from non-grains, for example a potato vodka. Are you eating any other foods high in iodine?

[Rogol72]

If you are taking vitamin and mineral supplements, double check to make sure they are gluten free. I've had DH (celiac disease) since 2009 and Ulcerative Colitis since 2002. I've been on Dapsone to quell the itch and clear up the skin blisters. DH patients seem to be more sensitive to small amounts of gluten.

Perhaps finding a functional medical pracitioner with experience treating Celiacs, as an adjunct to your current physician. Maybe getting tested for additional food intolerances/sensitivities. Cyrex Labs have an array of sensitive tests.

Regarding a deteriorating mind, I've been there and recovered. Any imbalance in the gut flora ... candida/yeast overgrowth or SIBO can contribute to brain fog, as will an imbalance in neurotransmitter production in the gut ... especially after a glutening.

Dr. Robert Pastore has some excellent podcasts on Spotify regarding nutrition, brain health and all things Celiac related. He's a PhD, CNS and a Celiac with DH.

[Anniehall]

On 2/7/2022 at 1:08 PM, Adam Baranek said:

TLDR: I have had dermatitis herpetiformis for several years now, but just recently it started becoming a lot worse. Despite going hyper militant on eating gluten free, removing virtually ALL cross reactors to gluten, replacing all of our pots/pans/utensils/etc. and replacing all of our detergents and bathroom products (AGAIN..) my gut is still inflamed from gluten and my gluten spots on my skin are getting worse and worse. I also fear that I may be developing depression, fibromyalgia and possibly other conditions BECAUSE of my gluten condition. Looking for advice on what I can try next, and any help would be much appreciated.

So about 7 years ago (at the age of 22) I was diagnosed with dermatitis herpetiformis, and then sometime later after getting some additional bloodwork done, I was officially deemed to be Celiac (more on the “sometime later” below).

Now for quite some time (up until fairly recently) I ate gluten free, BUT I will confess that I never really bothered to be militant about it. I always consumed gluten free foods only, but I didn’t care much about cross-contamination from eating out. I was still decently cognizant of sharing utensils, pots and pans, etc. and I though my bathroom products and laundry detergent were in the clear. For most of those years, I was overall completely fine, things were good, I wasn’t really all that itchy for the most part and my gluten spots didn’t bother me all that much. Until recently…

Over the past 5 months or so, it feels like my body and my mind are just slowly deteriorating... I feel weak/fatigued all the time, despite getting the same amount of sleep as normal, if not more. My energy levels are shot and I often have a bit of a depressed mood overall throughout the day. My muscles have felt like they’ve atrophied too. And of course, my gluten spots and gut inflammation have been getting worse. All of my problems started occurring about 5 months ago when I had gotten bloodwork done for my gastro. Now I should also confess at this point that I had not gotten official bloodwork done to confirm that I was Celiac, because I just assumed that I was with my dermatitis herpetiformis diagnosis, but, my gastro recommended that I get the bloodwork done just to be sure. However, apparently this requires me to go on a gluten-filled diet for at least a week before they can be certain of the results (btw has anyone else been told this?! It seems f**king insane looking back at it now). So, I did so for about a week, got the bloodwork done and it was 100% confirmed at that point that I was Celiac. For anyone that has my condition, as you could imagine my life was a living hell for several weeks after that.

So now that I’ve explained what has transpired up until this point, below I have listed everything my wife and I have tried to resolve this issue:

1)      Foods/Drinks with known gluten in them had been absent from our house for several months at this point (just for reference)

2)      We started with an elimination diet (carnivore/keto specifically), with the idea of getting totally better first (by basically eating the exact same stuff), and then reintroducing foods later to see what I react to. We are still on this diet to this day. Also, worth noting that we keep very careful track of our vitamins and minerals, and make sure our bodies get what is required.

3)      For quite a while during this period, I had virtually removed ALL known cross reactors to gluten. This included eggs, ALL dairy, coffee, soy, virtually ALL gluten free grains, even a lot of foods with iodine in them (we replaced our salt with one that wouldn’t be iodized)

4)      Alcohol use was cut down significantly. There has only been a day or two here and there where I had a few drinks, and when I did, it was either pure vodka or gin on the rocks with no additional ingredients. No other types of drink were consumed other than water.

5)       Laundry detergent and all bathroom products were replaced with brands that were certified gluten free (a lot of stuff from Vanicream)

6)      Our cast iron skillet, kitchen utensils (cooking and silverware), backing sheets, etc. were all replaced. Sponges and other equipment we use to clean dishes were also replaced.

7)      Started a Food Journal to keep track of every single thing that I ate and how my gluten spots felt each day. This journal has not helped me much at all yet though, as my spots would be perfectly fine one day, but then really bad the next, and I literally ate the same exact thing for the past several days straight… No break in my routine whatsoever and it just feels random…

😎 We have basically stopped eating out completely. All of our food is cooked at home, using the same pots/pans and utensils.

So, with all of that being said… I’m here looking for any advice that anyone could offer. Any help or ideas or insight would be extremely helpful and much appreciated. I don’t know what to do from here, I just feel lost. I get the same bloodwork done every few months to see how I’m progressing, and each time my doctor tells me that I haven’t improved even slightly… He just keeps telling me that I’m still getting “glutened” somehow, but I just don’t see how that’s possible with everything that I’ve done. If you made it this far, thank you for taking the time to read my story.

I've done the elimination diet for about a year. I noticed I tend to react more to protein foods that are high in arginine and low in lysine. Although I do break out even from quinoa which is higher in lysine. Corn and tapioca are the only gluten subs that I don't seem to have any type of skin reaction to. Tapioca is higher in lysine not sure why my body tolerates it but it is not a grain and makes excellent bread.. Onions and garlic have caused skin reactions and sore throat and I cut them out completely for months. They don't seem to make my throat sore now but they may still contribute to acne it seems so I'm still avoiding mostly. I don't react to dairy at all. My skin loves it and low fat dairy is my staple because I need protein but I'm not trying to doust myself in saturated fat because it's not healthy. Peaches apples and strawberry give me acne. I do well with cruciferous veggies and veggies in the carrot family. Maybe some fasting could help your system to reset your digestive tract and clear you out? Just dont fast too long. I'm just doing small meals when I'm hunger. Eating 6 tiny meals a day instead  of making big dinners. This was really hard for me for the longest because Ive been a binge eater for a long time but I feel a lot better when I just eat a little bit. The elimination diet is helpful in finding what you react to but eating a lot of one food only can also not really tell you if you would still react if you paired that food with other foods and didn't overeat that food. So I would say when doing the elimination diet eat the foods you know you don't react to for sure and don't go overboard with the trial food. Remember you can react to a food for 3 days after consumption and it is a good idea to fast a bit to reset your immune system. That being said long term fasts are dangerous because the bile in your gallbladder sits there and can turn to gallstones and effect your liver. When fasting take salt, magnesium, potassium, and calcium. You could also try fasting mimicking where you don't eat more than 500 calories a day and see what happens. I recently also have been wondering about marijuana use and the celiacs rash. Marijuana is high in arginine and lower in lysine and It seems when I get the rash it's when I'm relapsing on pot often times. I read that for some people pot can trigger a herpes outbreak. Interestingly on here I notice people mention iodine as a trigger for celiacs rash and iodine is also a trigger for herpes so I wonder if there are overlapping triggers for both celiacs rash and herpes. Just thoughts I'm having. 

[Anniehall]

Forgot to mention read my post on vitamin C and lysine.